This photo was taken a year ago today. It’s exactly a year since Poppy was diagnosed with Leukaemia and all our lives took a direction we never thought possible.
It’s hard not to used clichés sometimes and I’m loath to use language such as ‘journey’ or ’emotional roller coaster’ – but it’s a pretty accurate if somewhat trite way to describe the path our lives has taken this past year.
A year ago I’d had absolutely no concept of Poppy reaching where she is today. I was getting through that evening on sheer adrenaline and hour at a time at first, trying to keep it together for the fear that if I stopped for a minute, I’d have to face my biggest fears and darkest thoughts…
The day she was diagnosed was a Thursday, and the days leading up to it had been strange to say the least. It all started on Sunday 19th when we took her into an NHS Walk In Centre, concerned she was ‘looking a bit pale’ and it snowballed from there.
The nurse at the Walk In Centre suggested we go to A&E at hospital, for the purpose of ruling out a few basic things. We drove to Whiston hospital and time ticked on – we’d not expected to stay out so late, but we weren’t particularly worried at this point.
Poppy had some blood tests and at around midnight we were told her haemoglobin level was 3. Clueless we asked what it was supposed to be and we discovered that in children it should be around 10. I can remember a feeling of dread hitting me so hard and I instinctively knew ‘something bad’ was going on.
We returned to Whiston the following morning after a pretty restless night for a day of more blood and more tests. I think someone mentioned bone marrow being tested at that point, and that felt like another punch to the gut. But conversely the feeling in hospital certainly wasn’t one of panic and horror. One consultant seem rather convinced her symptoms were attributed to her nutritional intake and I know now that was the route that Kevin was focusing on.
That Monday night was also the first night I had to spend away from Poppy too. I was still feeding Oscar and it would have been impossible to leave him, so Kev stayed in hospital with her. That was hard and something I still feel guilty about to this day. I vividly remember lying awake and Googling “what are the symptoms of leukaemia” on my phone in bed as Oscar was snoring next to me. I started to get a sinking feeling which stayed with me for a long, long time and had a pretty restless sleep that night.
Tuesday was more tests and repeat bloods taken and a case of really bad timing when we had to transfer to Alder Hey in the middle of rush hour, with no clue of where we were heading and their hideous car parking arrangements. We had to be admitted via A&E there, and we were moved to ward C2, which despite everyone being great was a bit of a culture shock after the swankiness of Whiston. We were all cramped into a tiny room, and I remember starting to feel increasingly worried at this point. Poppy was very disgruntled as she’d thought we were taking her home. Everything felt claustrophobic and stressful. It hadn’t been the best way to arrive. We met Poppy’s consultant, Dr Caswell who seemed reassuring but told us they’d be repeating all the tests she’d already had the last two days. I can remember even then following him out into the corridor and asking him directly if the thought it was Leukaemia. Frustratingly I can’t properly remember his answer but it was along the lines that they had to rule everything out and it was a possibility. Looking back I often wonder if they were more sure than they let on – but I don’t think we would ever get an answer to that question. Perhaps they didn’t want to scare us? I was pretty scared by that point already, but I supposed I can follow that logic.
Wednesday was dreadful. Already resembling a pin cushion Poppy had blood taken so many times by that point I’d lost count. To get access she’d had cannula in the crook of her arms, back of her hands and her ankle. And each time it was happening she was getting more and more stressed out. Poppy had only ever been to a doctor once in her life until that week and she wasn’t taking all the poking and prodding well. I don’t blame her at all. With each new person who entered the room she became more stressed and more suspicious.
She had a blood transfusion that evening to make her strong for the scheduled theatre trip the next day. They gave her a sedative beforehand but it didn’t seem to do much. I’m not exaggerating at all when I say that for the first two hours of the transfusion she had to be physically restrained by myself and Kev on either side of her – holding her down to prevent her ripping the line out of her arm. It was such a hard task, I knew that the transfusion was making her strong but it was going against every instinct in my bones to put her through something which was making her so distressed. Each time we seemed to calm her down or temporarily distract her she would be disturbed by a nurse doing her observations which were every 15 minutes and the shouting and screaming would start again. Then, as if by magic she suddenly sat up – like a different child full of beans and energy and wanted to play and bounce up and down on her bed. It was as though the blood had suddenly perked her up and she was back to normal. Little did we know what the next day would bring…
Thursday. Diagnosis day. Anniversary. Cancerversary as I’ve heard it called. (bit weird). It’s hard to know where to start. A year on it’s still incredibly hard to put into words the thoughts and emotions that we had that day. I can remember the time line of events so vividly, but even after all this time my feelings are so hard to convey.
It started by having to go to theatre that morning, which meant Poppy having an anaesthetic, another first. Another step I never thought I’d be able to take. I took her into the theatre as only one parent was allowed, and I had till hold her in my arms till she went into a deep sleep and became floppy. It was hideous, I had to then walk out and leave her. I thought my heart was going to break. Again, it goes against all your natural instincts to leave your baby, lying there helpless – even though it’s in her best interests. Everything just feels so unnatural and wrong. I openly cried all the way back to the ward, snivelling down the corridors, (not for the last time either).
It’s strange the little details you recall, but I can remember a cleaner kindly touching my arm sympathetically not saying a word, and using her pass to open the door to let us back onto the ward.
Whilst in theatre the doctors were taking a bone marrow aspirate – which is like when you take the core out of an apple – in order to get a bone marrow sample. Although she wasn’t in theatre for long the waiting seemed to last forever. I can remember thinking not for the first time, how had we got to this point after what seemed like a fairly innocuous trip to a walk in centre. Things had escalated so quickly and it felt that with each day we were losing any sense of control.
I’ve still got texts on my phone from that day, letting people know she was out of theatre and that it had “gone well”. She seemed in such good spirits that for the first time that week I started to let myself think that everything was going to be OK.
I almost wince a little bit thinking back to that afternoon. We were so blissfully unaware of what was about to happen…
As Kevin had been staying in hospital with Pops he’d not seen much of Oscar so I suggested he go home for some rest, a shower and to see the champ. The idea being that I’d stay with Poppy till he took over that night time. Not long after he left around 5pm the student nurse, James who’d been looking after us came into the room. He said the results from theatre were back and the consultant wanted to speak to us in private. I knew then. Instinct, mothers intuition or whatever but I knew. Explaining that Kev wasn’t here, James insisted that Dr Caswell needed to speak to us together, and Kev needed to come back immediately. I rounded on poor James demanding that he tell me what was wrong, and that I needed to know if it was something “really bad”. Obviously he couldn’t say and I had to try and remain calm on the phone and instruct Kevin to quickly get back to hospital. No easy task when he was in the middle of traffic, but it felt as though he got back super fast. I’d paced and tided Poppy’s room, trying to keep calm in front of her, but my insides were churning and I felt sick.
As soon as Kevin returned it seemed as though Dr Caswell appeared and he came into the room followed by the ward sister Sally, who ominously shut the door behind them and suggested that we sat down.
Being told your two year old daughter has cancer was hands down the worst moment of our lives. The words hung in the air as we were calmly told that the results of her biopsy had shown leukemic cells but they would be repeating the procedure the next day to confirm as the bone marrow sample was so small (a clue of leukaemia within itself) and to establish what particular type she had.
We were told about treatment and survival rates but to me all I could hear was Leukaemia. Such a horrible looking, horrible sounding, vile little word.
I felt angry. How had this disease got into our Poppy? It felt so sinister that there was something inside her that we couldn’t see and had no control over. I’ve never felt so scared and so alone in my entire life. I turned to look out of the hospital window so as Poppy wouldn’t see me cry and I can remember seeing car lights and people in the streets outside. How dare they continue with their lives when ours was about to fall apart ? I was almost overcome with rage, so desperate for someone to take my hurt out on and for someone to blame.
Kevin on the other hand was his pragmatic self asking how we would fix this and make it better. I think that goes to show that there are no right or wrong ways to react to desperate situations, just that not everyone will react the same.
Whilst all of this was going on Poppy was playing happily on her bed, blissfully unaware of what was going on inside her. And I remember thinking almost how unfair that was. She was so innocent an had absolutely no concept of what was about to come. I remember asking how she could be so ill, when she looked so well. Just trying to comprehend it all, willing the doctors to have made a mistake and that they’d just let us go home.
The next few hours were pure adrenaline, fight or flight mentality. I had to keep busy as I was so scared of stopping because I didn’t know what I’d do. We needed to tell people what was happening and make a plan of how to deal with things. My best friends have since told me I was eerily calm telling them on the phone late that night but I didn’t want to start crying because I honestly thought if I did that I’d simply never be able to stop.
People have told us that we have been brave and that they don’t know how we’ve coped, but the fact is that you do. We’re not brave, we were terrified but you have no choice but to continue. We had to do it for Poppy to be there for her through the next procedure, to get our heads around the jargon and the terminology and to help her in any way we could. We’d have done anything to trade places with her, and done anything possible to help make her better. That’s what being a parent is. It doesn’t make us special it makes us human. We were lucky that we had hope. From the off we had a morsel of hope to cling to. The doctors were confident and they spoke of success rates and making her better. Sometimes hope is all that you have, and we had to be hopeful.
There’s no denying it but when you hear the word cancer you think of death. It sounds like an evil thing to say, but you do. For a long time I did anyway. It was as though the two words were synonymous with each other. But, genuinely I don’t any more. In the last year I’ve seen children getting better and coping with far more than they ever should. I’ve watched Poppy overcome more than she should ever have had to, and I think she’s brilliant. I think all the nurses, doctors, consultants and scientists are brilliant. Obviously this is never the path we would have chosen for her, but to see how far she has come, in a year is incredible. We’re so proud of her and all that she’s had a cope with. I certainly couldn’t have ever imagined reaching this point a year ago. I thought today was going to be terrible, but it’s been fine. It’s another day. Another day Poppy is getting better and another step closer to the end of her treatment. I will sign off with a picture of her taken today, looking happy, well and cheeky. I will look forward to posting another one next year, and in many, many years to come.